Crohns pain upper right quadrant

[April423]

Hi everyone,
I am new to this but I've had crohns since I'm 11 years old. I'm now 35 and I've had terrible pain just under my ribs on the right side. It's so unbearable that I went to the ER because I thought for sure it was my gallbladder but turns out everything seems fine. Here's a little background info. I've always had stomach pain, weight loss and fevers since I was a child and I would go to the hospital for Iv steroids and I lived on 6mp. In 2006 I had a small bowel resection for a stricture. In 2009 I became pregnant with my son and immediately stopped the 6mp. After I gave birth to him I was symptom free for about a year. Then all of a sudden I started getting terrible paralyzing pains in my right UQ. After doing every test imaginable for my gallbladder my doctor decided to treat the pain as crohns pain. Started humira. Was on it for a year and my symptoms got worse. Only now the pain was in my chest and joints as well. Excruciating pain. Make a long story short the humira gave me drug induced lupus. It took about a year but that finally went away and the right UQ pain was back again. Started 6mp again which seemed to help until January 2014 when I got the flu and pneumonia and ended up in the hospital again. I decided to stop all meds and was fine until Tuesday night. Ended up in ER for the worst pain of my life. It hurts so bad I can't stand up straight, can't lay down (especially on my right side) my ct scans are good just showing slight thickening of ileum with no active crohns. I've had so many scans that showed active crohns in the past but the pain was never this bad. My gallbladder was fine, pancreas fine, liver fine. I just don't know what to do anymore. I can't take humira (or anything like it) and can't handle living in the hospital from immunosuppressants. Any suggestions? Anyone else have severe right UQ pain with nothing showing? Sorry for the long message. Any input is greatly appreciated!:sign0085:

 

[24601]

Hi April,
I'm so sorry that I don't have anything terribly useful to contribute on the subject of upper right quadrant pain but I just wanted to send you my support. I can relate on battling this disease for so long - I'm now 36 and started having some severe symptoms when I was 8.

Have you ever tried a liquid diet to treat inflammation? Something like Modulen or Elemental? Since you've had such bad reactions to most of the other treatments it could be useful for you to treat a flare.

Also have you tried the anti-MAP antibiotic treatment?

I hope you get some input on this from someone with more experience of this issue!

 

[April423]

Hi 24601!
Thank you so much for your reply. I usually get treated in the hospital on Iv liquids and steroids without eating but that only lasts for so long. For the anti-MAP are you referring to flagyl and cipro? If so I just started them Tuesday so I'm hoping they help since steroids don't work for me anymore. Thank you so much for taking the time to respond. I appreciate it. Hope your symptoms are under control for now

 

[24601]

I don't think flagyl and cipro would treat a possible MAP infection but some Crohn's patients do respond well on them so fingers crossed they work for you!

The anti-MAP antibiotics can vary depending on the protocol your doctor chooses but I think they all use a macrolide drug like Clarithromycin and then combine with another antibiotic usually from the Rifampicin family. Might be worth a try for you in the future.

I tried anti-MAP (and I'm glad I did) but I just couldn't tolerate the antibiotics. I'm currently free from active disease (apparently) but I have symptoms and my doctors would like me to have a stem cell transplant to prevent further loss of small bowel. I think I'm another unusual case like yourself :ywow:

 

[April423]

Oh wow. I've never even heard of that. Thank you so much for the info. I will def ask my doc. Good luck to you with the stem sell transplant. I hope that helps you. Have you tried the breaking the vicious cycle diet? I know it's a pain but it can work for some people...keep me posted about the stem cell transplant. Hope you feel better soon.

 

[24601]

I have tried that diet and I did have some success but I think perhaps for me the improvement was due to the reduction in fermentable food because I had a lot of issues at that time with small intestinal bacterial overgrowth (due to strictures) so I think perhaps primarily for me it was treating that. Well I like to tell myself that too because I found it too difficult to stick to :duh: Partly I think because I'd spent a few years living on Elemental and then I desperately wanted to eat normally...although I couldn't and then going back to SCD didn't really work (and perhaps never would have I just can't know) because I was going downhill really fast and desperately needed surgery for more strictures and an intussusception.

Having said that I think it's worth trying! I think it's worth trying pretty much everything and anything that you can! I even tried drinking whipworms :eek2:

The problem with me trying new treatments now (and there are some newer biologics I could try) is that these days I don't have any indications of disease activity to assess how well the treatments are working for me. With 90cm of small bowel left my doctors feel that it's too much of a gamble and I could end up needing a small bowel transplant which doesn't have a great survival rate so the idea is that we go with a heavy hitting treatment like a stem cell transplant to minimize the maximum uncertainty. I'm not going to lie, I'm a little apprehensive and it doesn't help that I don't fit the typical picture of patients going for a stem cell transplant but it still seems like it might be the best option for me. I'll let you know how that goes!

There was a good link to an information pack about anti-MAP treatment at crohnsmapvaccine.com which could be useful if you want to give info to your doctor about that treatment. The link isn't working right now but I'll see if it can be fixed or can be found elsewhere. There are some threads on this forum about trying that treatment too.

 

[April423]

I know! The diet was so hard to stick to. I only lasted three months myself lol. Well I will def look into everything you said and I really hope the stem cell treatment will help you. I've heard good things about anything to do with stem cells. Try to hang in there I really hope things get better for you soon! Def keep me posted! I'll keep you in my thoughts and prayers.

 

[24601]

Yes, SCD is so hard! I hated not being able to eat potatoes and bread and actually felt like I struggled with energy levels in a different way than my normal Crohn's way because of missing those carbs from my diet. I guess we all handle these things differently and I couldn't manage it long term despite it improving my gastro symptoms and even though I like to think I have a decent amount of willpower having spent 8 weeks at a time drinking only Elemental 028.

I'm very much hoping that there will be some great new treatments for all of us or that the Crohn's MAP vaccine will be the answer for many!

I hope you get some answers to your right UQ pain soon! I'll be sending you healing thoughts!

 

[April423]

Thank you! I hope there will be some new treatments too! Fingers crossed!

 

[Manalishi]

Best of luck April423. My thoughts are with you

 

[April423]

Thank you

 

[JenS]

I have Right Upper Quad pain on and off for a year!! I had an xray and ct-scan. Both were fine. Pain comes and goes!

Growing up, my pain was LOWER right. I can't find many with UPPER right.

 

[April423]

That's so strange because I had lower abdominal pain growing up also. Now it's so high up its right under my breast. All my tests come back fine showing mild thickening and slight crohns but nothing major. Meanwhile this was one of the worst pains I've ever had. EVER! I'm going to the dr tomorrow and hopefully will get the results from my MRI that I had on Monday. I'll let u know if there's anything that helps me that might possibly help you. Thanks for writing to me

 

[JenS]

That's so strange because I had lower abdominal pain growing up also. Now it's so high up its right under my breast. All my tests come back fine showing mild thickening and slight crohns but nothing major. Meanwhile this was one of the worst pains I've ever had. EVER! I'm going to the dr tomorrow and hopefully will get the results from my MRI that I had on Monday. I'll let u know if there's anything that helps me that might possibly help you. Thanks for writing to me ��

Yes, please let us know. I am curious. My doctor thought gallstones, but like I said ct-scan was clear.

 

[April423]

I will! My doc thought gallstones too but even hida scan was normal. I'll let u know if I find anything new!

 

[JenS]

April, My doctor was pushing and poking on my tummy today. He got to one spot and I screamed. I asked "What is that area?" and he said "Gallbladder!" BUT my CT_scan shows normal Gallbladder and lots of stool in the Cecum area (where short intestines meets large intestines). He ordered more bloodwork and more stool samples.

 

[April423]

That's exactly where my pain is. My MRI came back that there's active crohns in a large amount of my small intestines. I had a re-section in 2006 and my doctor said it's very common for the crohns to reoccur near surgery site. He suggested a new medicine called entyvio but there's no way I'm taking that. It has terrible side effects including a rare brain infection (just like it's rare to get lupus from humira which I did) so I'm pretty much screwed. I'm on cipro and flagyl now which is helping a little but my dr also gave me chlordiazepoxide-clidini which is an anti spasm, calming relaxer for intestines. Seems to be helping me! Maybe u could try that?! My next step is marijuana. I seriously think it's safer than all the other drugs I've been on. If you try that anti spasm drug I take 2 pills instead of 1 just an FYI. I hope u feel better soon!!

 

[April423]

That medicine is also called librax. Just curious Does your pain hurt worse when u caugh, sneeze, yawn or take in a deep breath?

 

[JenS]

Oh gosh April!!! So sorry to hear your news.

no, pain does not get worst with those things.

 

[April423]

Thank you. Hey it could be worse right?! Can't complain. Hope u are feeling better soon!